Replies to This Discussion

Permalink Reply by Dewey M Reynolds on March 9, 2010 at 12:05pm

I have had 6 cerebral angiograms so far along with three embolizations. I was awake on all the angiograms, although I was slightly sedated.

After the first embolization I was told the surgeon had removed all of the AVM. Two years later I had another angiogram that showed the AVM had spread to other areas of the brain. I then had another embolization, followed by another a few months later. So far it has not been removed, and it continues to grow. Due to my age (77.7) the doctor considers me a poor risk for further embolizations, and has referred me to the gamma knife division of Harborview Medical Center in Seattle. I am now trying to decide if I want to go through with the gamma knife procedure or not.

Dewdo from the other Washington

• ▶ Reply

Permalink Reply by Dewey M Reynolds on March 9, 2010 at 1:44pm

Gordon:
Where is you dura avm located? Have you had any embolizations on it? I had a lot of head trauma in the military and I think mine was caused by that. It took 40 years to for it to manifest itself! So far I have had six angiograms, and 3 embolizations and I still have it. Mine is located across the top and center of the brain, and has caused some verbal limitations, learning and retaining information problems plus the headaches and noise. The doctor says the gamma knife is the next treatment since the embolizations didn't get it all.

Good luck on your treatment.

Dewdo from the other Washington

Gordon D said:

Susan
! I'd like to thank you also for the information. I've had two Doctors tell me that my AVMs were partly caused by my blood disorder (Factor V Leiden )and some type of trauma. Now if this has any truth to it then I would think I could have many more. Now I do have a Dura AVM which I hear acounts for about 2 % of all AVMs and was not present at birth .But who know what we will hear tomorrow lol

• ▶ Reply

Permalink Reply by Gordon D on March 9, 2010 at 4:35pm

Dewey
I have two Avms,yes i said two I got a good deal so I told them I wanted two .lol I have one on top of my head ( superior Sagittal Sinus ) and one in the rear ( Torcular). So far I've had 8 angiograms and 4 embolization and one Gamma knife treatment. I had a lot of brain trauma from wrecking stock cars and playing hard when I was young and dumb. As far as side effect go, I loose my peripheral vision a couple times a day for about an hour or so, and yes I have the noise too. But other then that I'm still having fun.You know I agree with your doctors I think you need a Gamma treatment too I shouldn't be the only one having all the fun. Talk at you later Gordon

• ▶ Reply

Permalink Reply by James Larken Smith on March 9, 2010 at 5:23pm

Well, I can't talk about the regrowth part, but well, I had my first angiogram, I was in the hospital, and they were trying to find out what was causing my problems. No one knew I had an AVM at the time. I have the angiogram on Tuesday. I get out of the hospital on Wednesday, I have the major bleed and stroke on Thursday. I have always wondered if it contributed a little... Probably not, but its a weird timing....

• ▶ Reply

Permalink Reply by Gordon D on March 9, 2010 at 5:40pm

James
I had two bleeds during or between my first and second angiogram ,I switched hospitals and Doctors and never had that problem again .So what can I say !

• ▶ Reply

Permalink Reply by Dewey M Reynolds on March 9, 2010 at 6:06pm

So far I have been real lucky in that I haven't had a bleed, but I am getting tired of angiograms and embolizations. I have lower back problems and lying on the table for the angigram and having to stay still for an additional six hours makes it real tough on my back.

Gordon D said:

James
I had two bleeds during or between my first and second angiogram ,I switched hospitals and Doctors and never had that problem again .So what can I say !

• ▶ Reply

Permalink Reply by tinamarie on March 19, 2010 at 6:04am

I had an angiogram in Feb. I was scared. I was awake, but they gave me Versed in the IV.I was totally relaxed, even dozed off. I had to lay flat for 3 hours after. My leg is a little numb, and I had a huge bruise. Honestly it was not bad at all. Good luck, I'll pray for you.

mary kate said:

Wait...so you were awake during the angio...I thought they put you to sleep? I had one after my craniotomy, but don't remember anything after being wheeled to the room. I just assumed they put me to sleep, but it coulda been the morphine

Kene Iloenyosi said:

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

• ▶ Reply

Permalink Reply by Sandra Krack on March 19, 2010 at 9:28am

Mary Kate, As you i am comfused, mine was deep in my brain and ws told that it will not grow back. But why do i have to have an MRI every 3 months ? and about running in families my grandmother died of the same as i had. But was told that IT DID NOT run in families. But makes one wonder..

Peace and much happiness Sandra

• ▶ Reply

Permalink Reply by Dewey M Reynolds on March 19, 2010 at 10:58am

I am no longer confused. After my fist embolization the doctor said he had removed it all. A year later I was called in for another angeogram. I was then told that the AVM had grown and was larger. Another embolization was called for to releave serious headaches. Less than a year later I was again for another angeogram followed by another embolization. After the third embolization I was told by the doctor that he did not get it all and I was told I would need to see the gamma knife people for further treatment. The neurosurgeon told me the AVM was malginant, meaning it would continue growing and needing further treatment by the gamma knife.

• ▶ Reply

Permalink Reply by Dewey M Reynolds on March 19, 2010 at 11:50am

I have had six angeograms, and was awake during all of them. They said they gave me something to relax me, but there was little to no effect. The hard part was laying on my back for 6 hours. They wouldn't give me pain killers because I didn't have an escort and had to drive myself home afterwards.


tinamarie said:

I had an angiogram in Feb. I was scared. I was awake, but they gave me Versed in the IV.I was totally relaxed, even dozed off. I had to lay flat for 3 hours after. My leg is a little numb, and I had a huge bruise. Honestly it was not bad at all. Good luck, I'll pray for you.

mary kate said:

Wait...so you were awake during the angio...I thought they put you to sleep? I had one after my craniotomy, but don't remember anything after being wheeled to the room. I just assumed they put me to sleep, but it coulda been the morphine

Kene Iloenyosi said:

Angiograms like any invasive procedure has its risks, but I had one in preparation for my surgery. It was actually fun to watch the scope going up my artery, past the heart and up to the brain area. The most painful part was the putting the catheter in the upper leg area, and it was just a pinch.

My doctors tell me it is not hereditary and that they don't regrow. I have no cause to not trust them.

Hope this helps.

• ▶ Reply

Permalink Reply by Larisa Diephuis on March 20, 2010 at 6:48am

From what I have gathered from seeing a combo of 6 neurologists, neurosurgeons & interventional radiologists:
- angiograms right after surgery are done while you are still "asleep", embolizations which starts off with the angiogram are done while you are "asleep", but a normal every day angiogram test is generally done while you are awake (I have had two of these)but they give you some nice liquid vallium in your iv so you feel pretty good, even when you can tell that they have found "it-the AVM" by the whispers
-AVMs are generally thought of as congenital rather than hereditary, but one of my docs really believes they are genetic, and there are studies my RN sister has found of sisters that both have AVMs, that indicated some genetic link. In addition I have an identical twin, who alain has severe migraines, all my docs want her to get MRIs to look for one in her brain too, but some are more concerned about her than others. The doc at mass general admits he's interested in her, as he hasn't treated another person with an avm with an identical twin....all that to say that I don't think the medical community has complete agreement on the hereditary or not issue but all the websies indicate it is congenital but not hereditary. I'd like to blame my avm ony sister kicking me in the head while in utero, but I haven't mentioned that to any of the docs yet : ) that's kind of a joke, my twin & I have one of those love/hate relationships
-also I'm goimg to ask the neurosugeon here in Boston about you question about the clips from one of your previos forums...I'm really curious about that too. Hopi
g to schedule my crainotomy while I'm here in Boston, but they have warned me about up to 3 month wait...but I'm ready to get this overwith!!!

• ▶ Reply

Permalink Reply by Larisa Diephuis on March 20, 2010 at 9:15pm

And to clarify, the docs are not concerned about my parents or my child having an AVM or my other two sisters really, but they are more concerned about my identical twin because we have the same exact genes. So they are not as concerned about me passing it on to my kids or my kid having it because i do but they are worried about my sister because we are identical (and also shared the same space in utero for that matter)...not sure if that makes total sense. They all have a little different take on it all but all seem concerned about my twin (but some are much more concerned than others)

Larisa Diephuis said:

From what I have gathered from seeing a combo of 6 neurologists, neurosurgeons & interventional radiologists:
- angiograms right after surgery are done while you are still "asleep", embolizations which starts off with the angiogram are done while you are "asleep", but a normal every day angiogram test is generally done while you are awake (I have had two of these)but they give you some nice liquid vallium in your iv so you feel pretty good, even when you can tell that they have found "it-the AVM" by the whispers
-AVMs are generally thought of as congenital rather than hereditary, but one of my docs really believes they are genetic, and there are studies my RN sister has found of sisters that both have AVMs, that indicated some genetic link. In addition I have an identical twin, who alain has severe migraines, all my docs want her to get MRIs to look for one in her brain too, but some are more concerned about her than others. The doc at mass general admits he's interested in her, as he hasn't treated another person with an avm with an identical twin....all that to say that I don't think the medical community has complete agreement on the hereditary or not issue but all the websies indicate it is congenital but not hereditary. I'd like to blame my avm ony sister kicking me in the head while in utero, but I haven't mentioned that to any of the docs yet : ) that's kind of a joke, my twin & I have one of those love/hate relationships
-also I'm goimg to ask the neurosugeon here in Boston about you question about the clips from one of your previos forums...I'm really curious about that too. Hopi
g to schedule my crainotomy while I'm here in Boston, but they have warned me about up to 3 month wait...but I'm ready to get this overwith!!!

• ▶ Reply

• ‹ Previous
• 1
• 2
• Next ›
• Page